Managing dysregulation

We have autism all wrong: The radical new approach we need to understand and treat it, an excerpt from “Uniquely Human: a different way of seeing autism” by Barry Prizant.

Instead of just managing behaviours, he suggests listening carefully, observing closely, and seeking to understand the child’s perspective and experience.

Usually the answer is that the person is experiencing some degree of emotional dysregulation. Our neurological systems help by filtering out excessive stimulation, telling us when we’re hungry or tired or when to protect ourselves from danger. People with autism, primarily due to underlying neurology (the way the brain’s wiring works), are unusually vulnerable to everyday emotional and physiological challenges. So they experience more feelings of discomfort, anxiety, and confusion than others. They also have more difficulty learning how to cope with these feelings and challenges.

To be clear: Difficulty staying well regulated emotionally and physiologically should be a core, defining feature of autism. Unfortunately professionals have long overlooked this, focusing on the resulting behaviors instead of the underlying causes.

Here is the important irony: Most of the behaviors commonly labeled “autistic behaviors” aren’t actually deficits at all. They’re strategies the person uses to feel better regulated emotionally.

Supporting competence

Supporting Competence: the parent’s journey (Profectum). This presentation features Ido Kedar, his mother Tracy Kedar, and Elaine Hall.  Ido wrote a very insightful book called “Ido in Autismland”, which I have reviewed here, and Elaine is the author of “Now I see the moon”.  For those who can’t access Ido’s book, this is a great summary/introduction to his story, and his passion to see parents, therapists and teachers presume competence in non-verbal Autistic people, and Tracy and Elaine tell similar stories.

Advice to parents of newly-diagnosed

Advice to parents after an autism diagnosis, by ASD Dad. A very positive list!  Includes tips like:

  • nothing about your child has changed- they can just access services and support,
  • presume competence,
  • get to know teens and adults who have autism- they have great insights,
  • let go of your expectations and live in the present,
  • remember that your love and acceptance for your child is what matters most.

Driving and AS

Driving and Asperger Syndrome (The ASC Good Practice Guide). This article, which begins towards the bottom of page 7, is very thorough! Covers difficulties likely to arise (eg dyspraxia, multi-tasking, rule application etc) and tips to help overcome them, and some tips for instructors (eg being aware of the effect of using literal language, difficulties with generalisations etc).

Kids with disabilities need to learn…

Adult with disabilities shares what kids with disabilities need to learn, by Andrew Pulrang.

What skills do children with disabilities need to become independent adults? There are plenty of transition planning guides and parenting tips to help answer this question. I would like to offer some ideas to consider, as an adult who was once a child with disabilities.

At times it may seem like independence is determined by the type and level of disability a person has, but it isn’t. People with all kinds of disabilities live independently. What they have in common is a set of key skills and habits… (very sensible and practical list!)

Judith Heumann, one of the leaders of the disability rights movement, helped define Independent Living, when she said, “Independence is not about doing things for yourself. It is about having control over how things are done.” You can be independent and in control, even if you literally can’t lift a finger or speak an audible word. You just need the right tools and supports.

Presume competence, in me

Presume competence, in me (Autism Bubble blog).

I’m tired of seeing great, loving parents, who never stop looking for ways they can do better for their kids being beaten down, and feeling like they can never be who, or what their children need.

We struggle to accept compliments, or encouragement as parents without feeling obligated to be offended on our child’s behalf, when usually all the person is saying is, “Hey, you’re doing a great job, keep it up” without meaning anything derogatory about our kids, or about autism for that matter. I say that all the time to my friends with neurotypical kids, because parenting is hard, and their response is usually ‘Thank you, I really needed to hear that today.”. So why is it so wrong for us to need and accept the same validation as parents from others?

Like a dyslexic

A great music video clip called “Like a dyslexic“, showing many famous people who have/had dyslexia, and their accomplishments.  Although available on Youtube, I have shared the link from Richard Branson’s blog, as I also liked what he wrote about this. The girl who created it, Isley, is 12 years old.

Reddit thread on disability

A powerful Reddit thread reveals what it’s like to be disabled (Washington Post).

[A] reddit user posted a thread about the lives of people with disabilities. Called “Disabled people of reddit, what is something we do that we think helps, but it really doesn’t?”, the thread received almost 10,000 comments from people with a wide range of disabilities, such as missing limbs, cerebral palsy, severe back pain and rheumatoid arthritis, in just a few days.

Here are 14 of the most common suggestions that people with disabilities made about how to treat them. Some of these suggestions are incredibly insightful; others should be obvious, but apparently bear repeating.

Autism, puberty and respect

Autism, puberty and respect, by Jess (Diary Of A Mom blog). The first thing that I really like about this post, is her explanation why she won’t discuss her daughter’s puberty (respect and privacy).  Her main message is “talk to your kids about puberty”.  Even if they’re non-verbal, and showing no sign that they’re registering what you’re saying, presume competence and talk anyway.  Find a way to communicate information to them (she lists some examples), because:

“There is nothing more disconcerting, terrifying even, than your body changing without warning. Than hormones toying with your moods and jarring your emotional world without explanation. These things, without context and without explanation, are confusing and terrifying.

You see, this isn’t something that will wait until our kids are “developmentally” ready to handle it. When their bodies are ready, they will have to “handle” it one way or another. They deserve to know what the hell is happening to them.”

Non-speaking communication

Two articles by Amy Sequenzia:

I don’t want your “protection” – outlines her experiences with people’s responses to her use of Facilitated Communication (FC).

Attitudes – Communication – Everybody communicates, but attitudes toward disabled people often hampers effective communication.